The President and Treasurer of our aHUS Patient Support Group of Australia (aPSGA) are meeting with Department of Health officials today (June 25, 2014) to discuss government funding for the only proven, life-saving treatment available for our small group of members living with aHUS.
Meanwhile, the lives of our members’ remain at the mercy of government negotiations with the manufacturer of Soliris, with regard to subsidising the treatment on the PBS under Section 100: Highly Specialised Drugs Programme.
In a cruel twist, today also marks the day that 19 year old Isabelle Ruiz from Melbourne is due to access her next dose of Soliris, which she describes as “a miracle drug.”
Pleading for her life, Isabelle has made a desperate appeal to the PM, the Hon. Tony Abbott MP, asking him to consider what he and his family would do if found in the same situation whereby his daughters, who are of a similar age, were facing life or death. She has requested Mr Abbott to provide her with urgent access to Soliris.
According to Isabelle, without life-long access to Soliris, her future is dire.
“Without ongoing access to Soliris, within a few months my kidneys will fail, and even though I will be on supportive therapies, they won’t be able to sustain my life and I will die.”
Isabelle has received 14 doses of the life-saving treatment to the tune of $191,000. Six doses of Soliris were Royal Melbourne Hospital-funded and the other eight doses were accessed due to funds raised via her family, friends, the community and the media. Isabelle’s family is now close to bankrupt, and she is unable to raise sufficient funds for her next dose.
Receiving her 14th dose of Soliris after 20 days – six days later than her recommended fortnightly dose – Isabelle recalls noticing immediate adverse reactions in her body. Her kidney function began deteriorating, with her creatinine levels rising above 200, while her blood pressure also began to soar.
Isabelle and other Australian aHUS patients facing a similar situation need ongoing access to Soliris for life.
We, a small group of Australians living with a big, yet little understood, ultra-rare disease, continue our ongoing plea to access urgent, government-funded, life-saving treatment. We request the same consideration granted to our Australian friends living with another ultra-rare blood disease known as Paroxysmal Nocturnal Haemoglobinuria (PNH), who receive ongoing, fully subsidised access to Soliris through the Life Saving Drugs Programme (LSDP), is also given to us, and that the life-endangering criteria proposed by the PBAC for accessing Soliris through the PBS: Section 100: Highly Specialised Drugs Programme is urgently revised. It’s simply a matter of humanity, not merely dollars and cents.